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Don't understand EBV test results, implications for treatment

Discussion in 'Immunological' started by Cynthia Robins, Feb 11, 2013.

  1. Hi, All. I'm sorry if this is a duplicate (many times!) thread, but I've searched the forum and can't find a discussion that simply explains EBV results and what they might mean for intervention. Someone else posted her partial results last week, but there weren't many responses.

    I've been sick for 6 1/2 years - acute onset after a flu-like virus (had a very bad case of mono 15 years earlier). About 5 months after getting sick (April, 2007), my PCP tested me for EBV - the results were: EBV CAPSID Ab IgG - > 5.0 (anything over 1.9 indicates the IgG antibody was detected), EBV CAPSID Ab IgM - 1.21 (anything over 1.09 indicates the IgM antibody was detected), and EBNA Ag Ab >5.0 (anything over 1.10 indicates EBV EBNA antibody was detected). Four months later,the results were EBV CAPSID Ab IgM = 1.30 and EBV EA Ag = 1.69 (both were read as "positive").Doc diagnosed me with ME/CFS, but was unable to offer anything in terms of treatment.

    In the intervening years, in my search for a treatment, I've had a zillion tests for everything from lyme to a mitochondrial disease, CMV and a cardiac disorder, and everything's come back negative. "You're fine."

    The only aberration ever in my bloodwork was the EBV titres, so last week, I went to the PCP and asked to have the EBV blood tests repeated. The results this time were: EBNA Ab/IgG - >8.0 (anything over 0.9 = positive), EBV CAPSID Ag.Ab IgG >8.0 (anything over 0.9 = positive), EBV Early Ag.Ab - 0.2 (anything under 0.9 = negative), and EBV CAPSID Ag.Ab IgM - 0.2 (again, under 0.9 = negative). The doctor's interpretation was, "You don't have a reactivation of the virus." FWIW, I have not been feeling at my worst of late, but I still don't feel well at all.

    A couple of questions: 1) Which of the above tests indicates "reactivation"? 2) What, exactly, does "reactivation" mean? A brand new infection? A full-blown flare-up of a chronic infection? 3) Does no reactivation mean that the EBV results are totally irrelevant? That is, most everyone has the antibody so the high titres don't mean anything? or 4) Could I still have a chronic, latent infection that's causing the symptoms and that perhaps could be treated?

    I do understand there's controversy about the role of viral infections in ME/CFS, but honestly I have nothing else to go on. Have been reading about the possibility of the disease being an autoinflammatory disorder, with the symptoms being caused by an increase in pro-inflammatory cytokines, and would like to either treat the cause (EBV?) or better manage the symptoms (anti-flammatories like LDN). But I don't understand these results well enough to advocate for clinical next steps.

    Can anyone offer a primer? Thanks in advance.
  2. vamah

    vamah Senior Member

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    I don't know the technical definition of "reactivation" but I do know that the IgG test is for long-term antibodies, so is not due to recent exposure to the virus. My inclination is to say that no way should your antibodies be that high just as normal antibodies from a previous infection. Since the antivirals used to treat EBV have relatively few side effects, I don't see any downside to trying that and seeing if there is any improvement.
  3. Thanks, vamah. I got overwhlemed reading about the anti-virals, too (I'd love to blame it on brain fog, but that's fortunately cleared in the last couple of years). I know we're looking at so many different possible etiologies for this disease...but I'm thinking inosine was one that folks have been using for EBV?
  4. vamah

    vamah Senior Member

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    My experience is a little complicated because I have had to do some experimentation on my own due to issues with my HMO. They refused to test me for viral infections, so I got my OB/GYN to prescribe acyclovir telling her it was for frequent cold sores (which was not untrue -- I was getting those). This caused a slight improvement in some symptoms (after an initial herx). When I finally got tested, my HHV6 was VERY high, but my EBV was normal. My interpretation was that I have EBV but it was being killed by the acyclovir which is ineffective against HHV6. If you only test positive for EBV then acyclovir may be a good drug for you because it has almost no side effects or risks associated with it. You don't mention, though, if you have ever been tested for HHV6, which is often found in combination with EBV in chronic fatigue syndrome. (Google Jose Montoya Stanford University for research on this.)
  5. vamah

    vamah Senior Member

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    Hope that made sense. My brain fog has been awful recently. ;)
  6. Valentijn

    Valentijn Activity Level: 3

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    According to the table near the bottom of http://labtestsonline.org/understanding/analytes/ebv/tab/test , your doctor is right and it's probably not a reactivation. By their terminology, you have positive VCA IgG and EBNA IgG, but negative VCA IgM and EA-D IgG. To show reactivation, they say you need to have EA-D IgG (EBV Early Ag.Ab) positive in addition to your other positive results.

    I don't doubt you've tested a ton of things, but there might be something you've missed. It's also possible that while EBV is not currently reactivated, something else is. If you wanted to post a list of what's been tested, and your symptoms, people might have additional suggestions.
    Ema likes this.
  7. Let's see: vamah, good point on the HHV6. I have never had a cold sore, ever; however, when I first came down with mono (I was 24), my partner at the time had cold sores. I suppose I could be harboring that virus and I don't believe I've been tested for that.

    Valentijn, hopefully these are the data about which you're asking:

    In April of 2007, I had the following test results:

    ESR, Westergren = 1 (don't know what this is) (range 0-20 MM/HR)
    Anti-nuclear AB w/rRFX (don't know what this is) - result = "negative" (no quantitative values given)
    Rheumatoid factor <7 (<14 = normal)
    Cytomegalovirus Ab IgG and IgM 0.31 (negative if <=0.9)
    Lyme disease <.91 (<0.91 = negative)
    Epstein Barr values as noted previously
    Free serum cortisol = 1.14 (the value would be above normal for the 4-6p collection, but within normal range for other specs)
    T4 = 0.88 (0.8-1.8 range)
    TSH =2.6 (range 0.4-5.5)
    T3 total =82 (60-181)
    All other values (CBC, metabolic panel, etc.) within normal range

    4 months later, all values within normal range; EBV test results as indicated earlier

    Somewhere along that line I had a test for a protein associated with a mitochondrial disorder - negative

    In the last year, I had a cardiac assessment - not the table tilt test, but just a basic assetment, ultra-sound, etc. - Absolutely normal

    About a month ago I had a full metabolic workup - everything was normal, including thyroid values, morning cortisol, etc. Endocrinologist said he was sorry, but everything looked perfect.

    Then I had these blood results - vitamin D is a little low, but that's new and my symptoms have been the same (more or less) for the last six and a half years.

    Symptoms are consistent with ME/CFS - when I first got sick, in addition to the unrelenting fatigue (I could barely stand), I had all the symptoms of an immune disorder - swollen lymph nodes in the back of my head; a weird little rash along my neck, chest, and back (like very tiny chickenpox or measles - tiny, but with a white head on them). The lymph nodes come and go now, as does the rash. Mostly I've got this exhaustion that, when I'm sitting quietly, presents as a high-frequency, jangly feeling deep within my muscles (I don't know how else to describe it) and a general feeling of sickness. Physical activity is grossly impaired - as I've posted elsewhere, I've been trying to ride my bike a little and feel like I go into oxygen debt doing almost nothing. I've overdone it a couple of times and couldn't lift my arms to wash my hair after a ride. Additional symptoms - orthostatic hypotension; poor sleep most nights; body temp is running a little low (around 96 degrees); no appetite...I think that's all.

    About two months ago I started taking a baby aspirin daily and also added calcium pyruvate to my regimen (1 g after each meal). Had a near-complete remission of the weird jangly fatigue, was able to ride my bike without nearly blacking out at the top of a hill, etc. And in the last month, that positive effect just stopped cold. I'm right back to where I was. Hence, the return to the PCP for blood work.

    What am I missing?
  8. vamah

    vamah Senior Member

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    I should probably just throw this out there, in case you weren't aware, that Lyme Disease is very difficult to test for and standard tests will not pick up chronic infection. Also, you should probably get thyroid tests redone, as low body temp can be indicative of thyroid problems.
  9. That's true about lyme, for sure. I'll see if my doc needs another vial of blood. <sigh> I thought the same about the low body temp, but the metabolic panel I just had done indicated everything was normal. One of the values (sorry, I forget where TSH, T3, and T4 fit into all this) was on the low end of normal, but the endocrinologist said that one of the other values showed that my system was adjusting for it. Maybe my thermometer isn't working...
  10. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I would just try valtrex or famvir for a few months and see if u feel better and also then check titres again. Nothing ever seems to be black and white but ebv does seem to be sticking out, so just smash the bugger and see what happens. I dont think inosine alone will help as much as an antiviral but it would be good to add it. I would also look into getting a NK function test if u can also a lymphocyte subset test, this can also help u identify if ebv is reactivating if it shows a high cd8 t cell reading?

    Also i would get a morning cortisol blood test and other hormones like dhea and other sex hormones etc and then possibly treat any defiencies. DHEA is commonly very low in many people with poor health and supplementing dhea can help as well as pregnenolone, both can help increase other hormones. If u go this line start very low and slow with doses of 5mg of one then maybe add the other later on, depending on your tolerance.

    cheers!!
  11. Valentijn

    Valentijn Activity Level: 3

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    HHV-6 is another Herpes virus that can reactivate and some studies have implicated it as being more common in ME patients.

    Testing catecholamine neurotransmitters (dopamine, norepinephrine, epinephrine) might detect a cause of orthostatic hypotension, as might HPA testing.

    ESR is Erythrocyte Sedimentation Rate, and if elevated indicates inflammation. But a very low value can also be bad, possibly indicating abnormal shape of red blood cells.

    Testing vitamin and urine amino acid levels also might help showing where there's a problem, and where supplements might help a bit.
    heapsreal likes this.
  12. SOC

    SOC Moderator and Senior Member

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    I'd bet on HHV-6 as a possible infection, too.

    You're in that place where most of us are before we went to see an ME/CFS specialist. The sad truth is that most of our local docs are so clueless about ME/CFS that they are either not ordering the right tests, or they are not interpreting them correctly for a person with ME/CFS. For example, healthy people can have a high IgG titre, so a high titre does not necessarily mean a reactivated infection; however, a high titre with appropriate symptoms can mean a reactivation. Most docs and labs ignore that point, especially if they are assuming you have a healthy immune system which most of us with ME/CFS do not.

    You might want to see an ME/CFS specialist who will do the appropriate immune function tests. Those tests will probably not come back normal. From there you might get immune modulators (depending on the type of immune dysfunction) or treatment for herpesviruses if needed.
    Valentijn and heapsreal like this.
  13. It certainly feels viral, so I've asked my doc if he'll run an HHV-6 test. Your point's well-taken, SOC, that symptoms and the high IgG levels are potentially more diagnostic than the titre alone, especially given that when I got sick a few years ago the blood work definitely showed a reactivation (which, if I'm not mistaken, is not what usually happens to folks who've had mono - so it suggests I've got an issue with that viral agent). I'll also talk to my doc about starting one of the anti-virals suggested above.

    Thanks again, and I'll give an update when there's news!
  14. Shoesies

    Shoesies Senior Member

    Cynthia Robins I have been watching this thread closely as I have struggled with what the GP called reactivations of EBV for three years. Finally he diagnosed me as CAEBV, which I believe is controversial as most studies indicate you need a biopsy of the affected organ/s to be sure. I see in your post the questioning of "reactivation" not being what usually happens to people with mono. My blood tests repeatedly show reactivations after small (2-3) month periods of convalescent phase for the three years. The relapses are getting worse. Just curious about what your doc said to you about this issue? Thanks, shoes
  15. I'm afraid none of my docs has taken it very seriously. My first bout with mono was in 1991 and I was sick for probably 8-10 months. It took about a year and a half for me to feel really ok , but I would have occasionally times when I felt sick all over again. About 8 years after that, I caught the flu and had another mono-like relapse for about three months. But it went away and so was a non-issue. But six years ago after getting sick, the symptoms were overwhelming. However, after I'd been sick for about two months, my primary totally dismissed the issue - "It's just a reactivation of the mono you had." She didn't see it as a problem at all, so I switched primaries. The second one recognized that reactivation was not normal, but she couldn't offer any treatment. In fact, when I spoke with her recently about the issue, her response was, "I have people with worse titres who are sicker than you." Not very helpful!! I'm still trying to get a hold of the new PCP who just ran these blood tests. The problem with him is he basically knows zero (didn't even want to read the journal articles I brought to the appointment), but has agreed to follow my lead (blind leading the blind - I'm an anthropologist, not a biochemist).

    No one has mentioned doing biopsies on me, but I don't think I've found a clinician yet who cares enough to try to get a definitive diagnosis. Even so, your titres AND your clinical symptoms sure suggest something's going on that needs to be addressed - certainly much more clearly than my last 20 years of on-again/off-again/mostly-on-again symptoms. Do you think your doc would give you a trial run on antivirals without doing a biopsy? Seems to me s/he has all the empirical evidence needed to make a diagnosis and do something - anything! - to try to help you out.
  16. Shoesies

    Shoesies Senior Member

    Cynthia Robins Man, your road sounds long and hard. ((hugs)) My GP has finally put me on long term Acyclovir after pulsing only during re-activations.I have had relapses approx 4-6 a year of at least 4-12 weeks bedridden for these last five years, three after diagnosis. My last relapse was so severe it actually concerned my GP enough that he indicated he felt we were dealing with CAEBV and/or ME/CFIDS <---his words. I had him repeat both of these to my spouse. My research is what unearthed the usual organ biopsy confirming CAEBV. My research also has me so very concerned with long term prognosis that I have become much more proactive about treatment. Basically the GP offered no other treatement options except anti-virals. When I showed him the clinical studies re: stem cell transplant, he said yes I am aware of it but your organs are not so bad as to be failing yet...we aren't there yet. How very reassured this makes me that you are basically just waiting until my organs fail to begin other treatment. I was preturbed to say the least. I have seen a Dr. who offers patients treatment with GcMAF followed closely by bloodwork and nagalse levels, I am into my third week...I am feeling some symptoms from treatment but so far am able to stand them with bedrest. I pray you find answers. I will not stop searching for mine! Oh, and EBV sucks HUGELY!
    Valentijn likes this.
  17. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Shoesies, what symptoms are you getting from treatment? GcMAF shouldn't really give you much in the way of symptoms at the right dose. Maybe not feeling great about one day a week?

    Sushi
  18. Holy smokes, Shoesies! I guess it's good that your doc acknowledges that you have something real and is willing to provide some treatment, but waiting until you experience organ failure before taking the next step is a scary thought. I agree - this whole thing sucks, and it's hard to do the background research, understand what we're reading, and advocate for ourselves when we're in the midst of it. Hopefully your spouse is working with you to find answers, or at least plausible explanations that merit further exploration by the docs. Hugs right back at ya!
  19. Shoesies

    Shoesies Senior Member

    Sushi - the first three weeks I got about one to two days of increased fatigue. This last shot hit me harder. Inflammation and fatigue worse than before. I have a Skype appt this pm with Dr. Bradstreet to address it and to get the inof we discussed previously. Hopefully that will right the ship. At least I have hope of it.

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